I'm not where I thought I'd be by now

I turned 39 yesterday and if I’m honest the weeks leading up to it shook me at my core. To be that much closer to 40 brought so many feelings and thoughts. The loudest voice being: “I’m not where I thought I’d be by now.” As I let this voice simmer in my inner being, I heard another voice: “Well, where did you think you’d be?” Suddenly, my spiraling thoughts stopped. As I continue to sit with that curious question…I have no words. No words, because as I reflect, I have everything I could possibly think of. I have a home filled with people I deeply love and who deeply love me. I have a non profit that I get to lead as I partner with my neighbors. I get to make my living out of my creative expressions. I have amazing friendships, and so much more.

Maybe instead of saying, “I’m not where I thought I’d be at 39,” I can say, “I didn’t think my 30’s would be so hard.” Now that feels true. As I look back there’s been so many highs and so many lows. From losing my entire community of friends, to a pandemic, to my daughter being diagnosed with a chronic illness and more. But the more I reflect the more I see the good: I started my healing journey around my cultural identity, my story, and my beliefs around money. I built new friendships where mutuality was/is at the center. We bought a home within our means (if you don’t know we lost our first home in 2010). We became student loan and debt free. I’ve become a better mom and wife. So in all of the hard, I see the character building it did into shaping me to be who I am today as wife, mother, daughter, friend, and boss.

So, may we reframe how we talk to ourselves. Our accomplishments do not determine our identity or sense of worth. The world doesn’t get to tell us we aren’t enough. How much money we have in the bank doesn’t determine our level of success. Our success is determined by aligning our decisions in a way that brings us each joy and meaning. And friend, that looks different for everyone, which means we can find peace and rest through releasing the pressure to compare.

Until next time friend,

xoxo

Jasmine

THE UNSEEN HARD DAYS...

I recently sent a DM to an IG friend and shared about the unseen hard days. As a parent of a child with a chronic illness there is much in our day where IG stories can not fully capture the struggles we face on the daily. When I’m asked how Dakota is doing, I often don’t know how to answer that question. How do I provide enough context while protecting my daughter’s right to privacy? How do I convey the real challenges she faces, where one can fully grasp that this is a forever thing, that one day could be good, and then the next day can be rough as heck? How transparent do I get, while protecting myself as I walk through a perpetual cycle of grief, and give myself permission to say, “I don’t want to talk about this today.”? How do I have faith in the midst of the continual unknowns?

Friends, all I can say is this is HARD. It’s COMPLEX, it’s NUANCED, and it sucks. But if you are like me, a parent, caregiver, family member to someone with chronic illness or a disability, I want to say I understand those unseen hard days. You my friend aren’t alone. There are so many of us walking through these moments, while not the same, we stand in solidarity together as we advocate for our loved ones. And with open arms, we welcome those who will cross over onto this side of being new diagnosed and when the overwhelm consume you, we will be here.

In the midst of those hard unseen days, may we acknowledge our grief, our new normal, and may we embrace what we can not change. But in it, beauty, fullness and purpose can be experienced and lived. Hope and joy can exude us as we navigate through the day to day.

So friend, when the next unseen hard day comes…. may we breathe, may we acknowledge, and may we feel all that we need to feel.

Until next time,

Jasmine

IT'S BEEN A YEAR...

It’s been a year since Dakota’s 3 week hospitalization that then led to major surgery. I’ll never forget this day. (photo in reel below). Dakota had just had a blood and a platelet transfusion and she was weak, tired, and fighting a for her life. Her body was so frail. As she slept on me, I cradled her, and heard the Lord say: “Declare that Dakota shall live and not die.” And soI prayed over her a fervent prayer. One of declaration and of promise. I asked Him to spare her, for her to live and not die.

Y’all watching your child suffer and not being able to do anything about it, does something to you as a parent. I’m learning I can’t control the outcome. All I can do is love her deep and well. I can listen, love and support her.

Where is she now??? We are still in so much unknown. She has some procedures that will hopefully provide some clarify as to why she’s still having complications, and help us be able to make the next best informed decision that will help her quality of life.

How can you pray?!?

Pray for the best next steps.

Pray that we can find a solution for her complications.

Pray for a restored mind. This condition deeply impacts one mental health too.

CLICK FOR HOPE | I NEEDED A LIVER TRANSPLANT

What is your story?

In the late 1990's my twin sister and I were driving home on a summer day, and out of no where a car came across the street, hit us on my side, nearly pushing us across 4 lanes to oncoming traffic. My sister's knee was pinned and we had bruises and concussions. The police and firemen came and we were transported to the hospital. They ran a bunch of tests and x-rays. They found our platelets count to be very low so they referred us to a blood specialist. The blood specialist found we had blood issues and sent us for several different bone marrow biopsies to rule out any cancers. Those tests came out negative. They then told us it was maybe our liver, so we went to another doctor, and found out that our liver was very lumpy and showing signs of Cirrhosis. We never drank or did drugs, so we assumed it was genetic.

I soon got pregnant and it advanced my condition. I was having complications with my pregnancy and at 24 weeks I had an emergency c-section, and as they were taking him out, they noticed my liver was not normal. It was really lumpy. The doctors told me that I was lucky because both of us could've died.

In 2003, my aunt noticed I wasn't looking well and said, "Millie, you are not looking good. The Holy Spirit told me that you need to get checked out by a doctor." I went to Northwestern to see a general doctor and they ran some labs. They had me wait for the results. As we waited, a nurse came to tell me that I needed to be admitted because my bilirubin was very high and was showing liver issues. The doctors came to my room, and told me that I needed a liver transplant.  I was about to enter the end stage of liver failure so they began the testing process for a donor with friends and family but no one matched except my younger sister. She was only a part match and her liver was smaller than mine. My husband was tested and it turned out to be a perfect match.  He agreed and we began the process for surgery.

March 26, 2003 was our surgery date. After my surgery, the doctor said that as soon as they opened me up, my liver stopped functioning and it was shriveled and green. They also said that if I waited any longer, I would have died. As I was recovering from the surgery, I got a blood infection, so they gave me antibiotics. I began to have pain, and they decided to do an ultrasound on my liver. The results showed I had a huge clot in the hepatic artery leading to the liver. The blood supply was cut off, so the transplanted liver wasn't receiving blood and as a result was dying. I needed to have another surgery, after we got the news. The doctor told me, "Don't give up! I need you to stay strong with me, I will get you through this." My mom and began to cry, but, I heard a voice in my ear that said not to worry, I would be fine.

I was in the hospital for a while due to high fevers from the infection. They decided to release me and send me home with a home healthcare nurse to give me my medicine through an IV. I was also sent home with a pager to notify me when a donor liver was available. I was paged several times, but they weren't a match. Then June 14, 2003, I was paged that another liver came in and it was a match. We went to the hospital and waited with several of my family members in my room before the surgery. When it was time they came and took me for surgery. It took longer then expected and it was on a Saturday. They never do surgeries on the weekend, I knew God was in control of the whole thing. He provided the cadaver donor for me in which I found out later she was Christian and had died in a car accident.

My mother was very worried because the surgery was taking longer than expected and she noticed the doctors kept coming in and out of the procedure room. The doctor came out and told my mom that my pressure went down and my heart stopped. I was so swollen that they needed to leave me open and wait until the swelling went down to close me up. My mom was so upset that my aunt said that they needed to pray for God to turn it all around. After they prayed, my pressure went up, my heart started again and they were able to close me up.

My recovery was long, hard, and painful but I never gave up hope. I kept reading God's word praying and worshiping Him. It's what got me and my family made through this difficult time. I give God all glory for being our strength during it all. I have been doing well but a few issues have come up, that have the doctors keeping an eye on me. Since I have been on my anti-rejection meds for a really long time, they can affect my kidney function. So they are constantly running blood test to keep a watch on them. I have been living day by day following my doctors instructions. With any signs of pain, bleeding, or bruising I notify my doctors and get my labs done. I take my medicine as instructed. Through it all, I try to live my life as normal as possible. My faith in Jesus has kept me strong. I use my oxygen everyday, and am waiting for my next evaluation from the respiratory therapist. It is helping to make my lung stronger, but I'm hoping they can take me off of the oxygen soon.

How has your story shaped who you are today?:

It has made a strong person both in character and in faith. I know God saved me from the brink of death more than once. I am so very grateful to Him, my family, friends, and church for their support.

What compelled you to share your story with us?:

I believe people need to know I am a true living Miracle of God, and that miracles do exist in these days. God is REAL!!

What encouraging words would you give to someone who shares a similar story?:

Keep a positive attitude and hold on strong to whatever your beliefs are. Have faith, believe, and trust it will give you strength.

CLICK FOR HOPE | They feared I had Spina Bifida.

What is your story?!?

Hi, my name is Katie and I am 20 years old. I was born with a birth defect called Spina Bifida. Spina Bifida is now known to be caused by a folic acid deficiency during pregnancy. There are two main forms of Spina Bifida. One develops in the first four weeks of pregnancy and the other between seventeen and twenty-one weeks. Most doctors do test for this while the mother is pregnant however, my mother's test came back negative. Although, she tells me it would not have changed her mind on having me, she just would have been better prepared. The day my mom went into labor with me she also lost a good friend to complications of Spina Bifida whom was only twenty years old. He spent a lot of time at a children’s hospital in Chicago Illinois. My mom had a very normal and healthy pregnancy and never dreamed she would have nothing less than a healthy child. I was a natural childbirth with no pain medication or anything. My grandma was in the room when I was born by my mom’s side. I am told I was delivered and the doctor allowed my mom to hold me for a brief moment. Then they whisked me away to another room. Being a first-time mom she thought this was totally normal. Shortly, after doctors came in and told our family that I had a mole like tissue on my back and they suspected it was something more. They feared I had Spina Bifida.

They were informed that I would need to be taken to a hospital that specialized in children’s care. Due to my mom’s friends passing, at no fault of the hospitals, she choose to go to Riley Children’s Hospital in Indianapolis, Indiana. Three hours from our hometown. So at three days old I arrived at Riley. Doctors did many tests on me including an MRI. To perform the MRI, it was very important that I not move, so I had to be given oral sedation. My grandmother told me my mom was too scared to hold me and said, I was so limp, almost as if I was dead. So, until the doctors where ready to perform the MRI she held me.  The testing confirmed I indeed had Spina Bifida. However, mine was on the unusual side. That little mole they saw was actually a lipoma or fatty skin mass that had grown over the hole in my spine. This was both unusual but a blessing. You see this lipoma had actually stopped spinal fluid from leaking and going to my brain. It also is the reason all the prior testing had came back negative. I spent 256 days my first year in the hospital at Riley. I had my first surgery at 3 months old. It took doctors fourteen hours. The lipoma had grown to the size of a grapefruit, it had in layman’s terms spider-like legs of fatty tissue that came off of it and had grown around the bottom four vertebras, my pelvis, kidneys, and bladder. My pelvis had to be cut and removed in spots and refused back into my body.

My mom and grandma never left my side. Taking turns going back and forth to the local Ronald McDonald House to get a little sleep or a bite to eat. After surgery, I had to be placed on a board and could only be held completely straight or it could paralyze me. My mom would wrap her arms around me while I laid in the crib, but only my grandmother would hold me because of this fear.

Doctors felt my Spina Bifida was so severe that I probably would never walk. Well, I proved them all wrong. I walked at nine months old with the help of my service dog. He had a harness that I would hold on to and use like a walker. I never crawled like a normal child though. Due to muscle atrophy I was only able to crawl backwards. When I was five years old I wanted to be in a school-related play. This required me to crawl forwards. This was the 1st time I was finally able to do so.

Shortly, after I had returned to Riley for another MRI this one was rather emotional for my mom. Instead of being sedated I could now lay still enough to not need it. The nurse called my name to go back for the procedure and I told my mom, “I was a big girl now” and I could go alone. Now, I fall asleep during them.

Over the years I have developed other health issues due to my Spina Bifida. I have a neurogenetic bowel and bladder and my kidneys didn’t start growing until I was about eight. At the age of nine, I developed chronic migraines. I now receive Botox injections in my head, temples, and neck every eight weeks to help with this issue. I also tried the Daith piercing for migraines and I didn’t really notice a difference until I had my last surgery in June of 2017 and had to take out my earrings.  My freshman year of high school I developed an infection called Histoplasmosis. I ended up in the hospital for about a month. I had been coughing so badly that my rib cracked. It punctured my lung and it deflated on the left side. Now, I have only a half of a lung on that side. At 15 I was diagnosed with Fibromyalgia.

Due to health reasons I switched to being schooled online instead of a classroom setting. I was able to work extremely hard and catch up and graduate on time. I have also suffered from Chronic Sinusitis for a very long time as well as some other issues. I am currently on medical leave from college due to some health issues but dream of someday working with hearing impaired children and those with special needs.

I enjoy reading, music, and crafts. I love to snuggle with my emotional support pets Harley and Chewie. They are both Holland Lop Bunnies. As well as spoiling my dog Baxter and kitty Princess Pepper. I have recently started the hobby of swapping letters with pen-pals and other “spoonies” aka Chronic Ill people. I also have a love for LuLaRoe clothing. To date, I have had a total of 8 spine surgeries and a total of 19 surgeries in all. I am currently in physical therapy after cracking the rod that was placed in my spine last summer.

How has your story shaped who you are today?:

I know my story has made me who I am. Without it, I don't know what my life would be like. It has helped me become strong in ways others will never understand. It is the reason I want to teach children with special needs. It is why I want to give back to others. My story has made me who I am and will always be.

What encouraging words would you give to someone who shares a similar story?:

I would tell them that it's going to be hard at times, but you can't give up. You have to keep going because at the end of the day all you will remember is how strong you really are.

CLICK FOR HOPE | A NEW DIAGNOSIS

Please share your story:

Hi I’m Jamilla Yipp and I have suffered with many forms of chronic illness my entire life. One of my current ones started at the age of 9. I was on a track team. My mom had to take me out due to nightly pains that I had in my legs. Doctors would just say it was growing pains. My mom sent me to many doctors, and blood tests, trying to rule out the issue. The pains are severe, and crippling. To this day, I can’t be under direct cold air as it will trigger the pain. The sad things is I still don’t have an answer for what it is. The closest diagnosis I've received is Fibromyalgia but I didn’t have the trigger points which brings me back to square one of not really knowing what's causing the pain. Fast forward to my teenage years and I began to have crippling menstrual pain, which as a teenager my mom thought they were normal. At the age of 20, I learned they weren’t normal and that I in fact had endometriosis. I choose to have kids early due to knowing the reality of infertility with this, and thankfully the endometriosis would go into remission. However after my 4th child, it came back with a vengeance. Fast forward once again to last year, I have been recently diagnosed with Trigeminal Neuralgia nicknamed the suicide disease. Last year was tough as it took many hospitalizations and tests to get the medication right. I’m currently on epilepsy medication to control it and it works for now, but during the process they thought I had Multiple Sclerosis which turned out to be my high blood pressure triggering small strokes. So here I am, figuring out how to live with a new diagnosis while being a mom to 4, wife, and small business owner.

How has your story shaped who you are today?: It has made me stronger and appreciate the little things more. Each day I’m pain free is a day to cherish.